Jesy Nelson described her daughters as the “bravest girls” ahead of their operation to have nasogastric feeding tubes removed on Friday. The Little Mix star’s twins, Ocean Jade and Story Monroe, were diagnosed with spinal muscular atrophy (SMA), a rare condition causing muscle weakness, which required feeding support early in their care.
Hospital video and emotional message
Nelson, who had the twins with former partner Zion Foster, posted a video from hospital with Ocean and Story before the procedure. Caressing her daughter’s face, she said: “Today is the big day. We’re taking these plasters off aren’t we? No more tuby for you in your face.” Addressing followers, she added: “They’re going down soon. The bravest girls in all of the world.”
On Thursday, the singer shared a photo of her twins, calling it the last day they would use the feeding tubes. She wrote: “Today is the last day of my baby girls having their tubes on their faces. As terrified as I am about them having their operation tomorrow, I cannot wait to finally see their faces again and see their little dimples that are always hidden under these plasters. I’ve honestly forgotten what it feels like to cuddle them and not worry about pulling their tube out of their nose or plasters off their face. It really is the littlest things we take for granted as parents.”
SMA condition and screening campaign
According to the NHS, SMA can cause muscle weakness, difficulty sitting up, crawling or walking, breathing or swallowing problems, and bone and joint issues. Nelson’s twins have Type 1 SMA, which begins in babies under six months old. She revealed the diagnosis in January, saying they are unlikely to walk or gain neck strength.
Since the diagnosis, Nelson has campaigned for SMA to be added to the newborn blood spot screening test, as early treatment can help avoid some devastating effects. In July, the Department of Health announced that a national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year. Hundreds of thousands of babies will be screened via a simple heel-prick blood test shortly after birth.
